Woke up at 3:15 screaming until 4pm. No tricks worked. The plan is to tolerate a feeding and get Connie back home. Mom is currently holding him and he's getting heavy but it's the only way to comfort him. Every time she sits down he goes ballistic.

We're hoping to get out of here at 5:30pm, but that depends on how well he does with the feeding he's getting right now.

We just met with Dr. Balzer and got the report and viewed the cath. He has considerable narrowing in the pulmonary artery going to the right lung. That is where they ballooned and the balloon made no difference in pressures. It went right back to the way it was. During the cath, his pressures in the RV were about 2/3 of the LV. This is too high, but also a bit misleading. During sedation, pressure drops from around 100 to 70, so a reading in the RV of 55-58 seems really high compared with 70, but not so high compared to 100. He talked to Dr. Bromberg during the cath and decided not to go ahead with a stent at this time! Yay! He said he can probably even go home tonight! We are thrilled. We follow up with Dr. Bromberg in a month. He thought we'd most likely do another cath in a year to two years, but Dr. Bromberg will decide that based on other tests over time. I asked how the RV-PA conduit looked and he said it looks good and if it stays as good as it is now that he can go 5-7 years before having it replaced! Initially, after surgery, we were told 3 mos-3 years, so this is outstanding news. No more open heart surgery for at least five years (for now, anyway). He also has two leaky valves but the leaks appear to be mild at this point. I told him that they had been calling it Severe Neo-Aortic Insufficiency and he said that over time with improved heart function, that the leaks can improve and that appears to be the case. Yay again! Also, we could see the two residual VSD's but they are very small and pose no problems to him.

Thanks for the prayers. Now we just need prayers that he'll wake up and then that he'll be sleepy again for the length of time that he has to lay flat (six hours, I think). They said they can give him something to help, but we're dreading keeping him happy and flat for that long.

Heather just came in to tell us that they have started ballooning. Ugh. This means that he required an intervention and we are definitely going to be admitted for an overnight stay. When Dr. Balzer came in to talk this morning, he said he didn't think ballooning would work so now we are kind of expecting that they'll have to stent it:(

Pray that if this is the case that he does not develop a big leaky pulmonary valve.

They took Connie back about an hour ago. He got a little versed in his tube before hand and it kicked in quickly. He was carefree and zombified in no time at all! They told us they will come with an update around 10-10:30. The procedure is supposed to last around three hours. We are waiting in a private room where he will "recover". This is our first experience with Children's Hospital and we are very impressed. From the atmosphere to the staff, it has been top-notch. I feel like writing them a letter to tell them so!

Dr. Balzer came in before they took him and reviewed the procedure and the possibilities. He "doesn't think" he'll have to do anything, based on what he saw on yesterday's echo. He said that the branch pulmonary arteries weren't visible in that study so he's not certain. He said if intervention was needed he doesn't think ballooning would work and he'd probably have to use a stent. The problem with stenting is they have to use an adult sized stent which would cause a pulmonary valve leak. I moaned about that because he's already got such a bad leak on the aortic valve. He said that he's actually got some leakage on both valves at the present time but that they are both MILD. He said that from what he saw yesterday they are MILD leaks. I wasn't going to argue with him. He's the doctor. If what he says is true, though, that means that Connie's Aortic insufficiency is not mild, not severe! Praise God. I guess He kept His promise when he told us on Easter that it was time for Connie to be healed. Slowly but surely, his heart is getting better!

We'll update more when we hear. We've also got some cute pics from this morning but I forgot to bring the cord to upload them.

Please pray for a safe trip to Children's this morning (we are leaving in a few minutes) and that all goes well with Connie's cath today. He is first case, so around 8 or 8:30 cst is when they will get started.

Sunday, April 13, 2008

Today Connie got himself to a three point stance and up on all fours a few times without any help. He is right on the verge of taking off. He even moved one leg and one arm forward in an attempt to crawl toward something. Not to fetch a toy, rather the box of toddler wipes! He "hops" on his bottom and is especially mobile on the tile floor in the kitchen. Slippery surface = Easier to move.

Tonight he "rode" on the ride on toy all by himself and actually made it move. This is a first! Granted, he could only navigate it backwards, but a feat nonetheless. I was proud of him for even balancing so well on it. He probably stayed on the thing at least 30 minutes with absolutely no help. Here's a little video. He stopped moving so much once the camera came out--typical! Oh, and please disregard the fact that it is a pink Disney Princess Ride On. It was Mary Kathleen's. My advice to new parents: Buy gender neutral "big" toys, especially if you have a girl first. No one bats an eye when a girl rides a black bike or blue scooter, but give a boy a pink ride on and you are asking for looks!

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention.In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old.He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.